Outcomes Matter

We have been exploring the language around quality: the assumptions we have, what has become cloudy, and what needs to move into the light. I am reminded of an older story of when my husband and I both worked at KenCrest. When we first started, we were DSPs.
The year was 1977 and I worked on the corner of 2nd and Susquehanna in Philadelphia. I knew that previously this home had been a tuberculosis infirmary, and later a small community clinic. After that, it became a school. My orientation was one night with a supervisor. There was no testing or classwork. The expectation was to start working.
I did know some things that would help me. I was the oldest child in a family who practiced inclusion easily. Almost every meal and every activity took all hands-on deck to get it completed. Regardless of age or ability, everyone was expected to do something. As a young adult, I had a clear idea of the outcome for the teens at my group home, grow up and get out. Not an unusual statement for any teenager. So, my husband and I took on that task. We helped those young people learn skills, develop abilities so that they could grow up and get out.
We taught cooking. We taught how to do laundry and make beds. We taught how to shop and plan social time. We taught how to get along with housemates. We were about as person-centered as we knew how to be.

Over the years in the field of IDD, we have reduced our expectations for self-determination and the opportunity to grow up and out. We stopped talking about outcomes and instead counted things like how many hours someone was “in the community.” When I think about my life, I have never described my outings with friends as “going into the community.” I have never counted the number of hours per week that I go shopping.

It would be good to pause and question our assumptions to be sure we are not holding someone back. Even the youngest of children will tell you, “I do it,” when you try to help them do tasks like putting on their own coat. Many children are happy even when the coat is upside down because they did the task on their own. Many adults who experience a temporary dependence on another person will tell you they can’t wait to get back their independence. Let’s expect that everyone deserves the dignity of self-direction, the greatest degree of freedom in taking care of their personal needs, the greatest expectation of achievement, and unwavering pursuit of what might make big dreams come true